One woman's quest for better health… living with lymphoedema

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Update from Cindy..

Just received this update from Cindy who is two years post Lymph node transfer with Dr Graznow …going well but always have to be vigilant for any issues … it is about gauging what works best … however not having to wear compression all the time is great… LNT will continue to improve too ..

“This is long overdue. December 11, 2016 was my 2 year anniversary for the VLNT. I am pleased to report that my leg size continued to stay small and I spent a lot of time out of my garment. I was beginning to hope the Lymphedema was gone. All that changed when I put a pair of socks on to wear with my boots. The socks were crew socks so the elastic was around my calf. While at work I decided to check and see how my leg was handling the elastic. I was horrified to see the swelling (and pitting) right above the sock. I ran home during lunch and put my garment on. Next day it looked good and I continued to not wear my day garment. Overtime, I realized I could feel my calf getting bigger during the day. It was slowly getting larger and heavier. I am back wearing my day garment, using the Jovi at night and receiving MLD twice a week. My leg looks and feels great again. I’m fairly certain I will be able to go without my day garment again. I don’t want to rush it. I waited an entire year post VLNT to experiment with not wearing my garment. Think I will give it a month before I try again. I’m grateful for all those days without my garment. I now realize I can have nothing on my leg that restricts circulation.

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27 thoughts on “Update from Cindy..”

I am 2 years out on my arm surgery. I finally put away the sleeve but not cured- I find I still occasionally get divets. I still maintain my diet of low sodium and perform my lymph massage each morning. I find that I have body dis morphia and I believe the arm is bigger than it is. Thanks for posting.

I had my lymph node transfer on 4/13/13, and I am never in a position to go without compression hose on the leg all day. I could never wear any type of sock that would cut into my leg at all. Unfortunately, there is no cure for lymphedema, and my transfer surgery was only moderately, if at all, successful.

I am sorry Bridget that your LNT seems to have not worked ….have you ever had scans to see if you actually have any viable lymph nodes in the transfer sight??? Maybe the surgery was not successful in creating new lymphatic path ways ??? I also think that this surgery has improved in later years as surgeons gain more experience and knowledge …

I’m in the same position you are in. Mine was done a year ago and despite continuing to wear compression and a night garment in addition to using a flexitouch, my leg has increased another 5%. Will resume wrapping and daily MLd next week. I’m pretty discouraged.

I am so sorry you are not seeing positive results .. it is hard to know why this works better for some than others .. a LNT will not help fibrotic tissue only the fluid … if there is a lot of fibrotic tissue there are better results with lymphatic liposuction .. but garments must be worn 24/7 afterwards .. sadly we are still waiting for a total cure ..

Yes it is very sad as there is so much suffering with this disease … there is more research but still no solid answers .. we really do need a cure rather than a bandaid which we seem to have at the moment .. .

I think it depends on the doctors and their experience with what is available … it seems as patients people have to follow up surgery themselves …not everyone is suited and it is up to the surgeon to decide what works best … compression garments and bandaging are still seen as the first line treatment.. also many peoples insurance companies make it difficult to get coverage ….. non of the surgeries seem to be a total cure but they may help…. hopefully as time goes by and there is more research the surgery will get better and better ..

Dr Rockson has a very good reputation in this field so will be interesting what he says this year about surgery..i know he is testing medications etc to find help but all are trials …i wonder what his views are re surgery etc …

He’s also my physician. He’s on the vascular forefront of surgical procedures and everything encompassing LE. (Btw, when did LE become the abbreviation for lymphedema? I thought LE was the abbreviation for lower extremity!)
Dr. Nguyen did my liposuction surgery (SAPL – suction assisted proteinaceous lipectomy). She also practices out of Stanford.

She wants to do my VLNT (vascular lymph node tranfer or transplant). Insurance has approved yet, on so many levels, I am not ready.

I really want to read or see or talk with someone on this thread or in social media platforms who is very happy they had the procedure done, is no longer donning compression stockings and basically the connections or transplants all took and their choice was a positive life changing event!

I understand everyone is different. Some people have fibrous adipose tissue that needs removing like me, before you can even think about the VLNT while others only have liquid in their extremities so that procedure may not make sense.

There has been no one connected to this blog that can say they never wear compression again…. they may wear it less and have times with no compression … they may have no more infections ..the leg remains softer and more responsive to any treatment.. if you are looking for a cure then this is not it yet … maybe as you have had the liposuction first it maybe better ???? .. What do your doctors say …. also now they do combinations of LNT and LVA … not sure if this helps more but so far have not heard that people are throwing the compression away!!! LE has been an abbreviation for a while… on the other side I am very happy I had a LNT as I have a leg that is better than it was, no infections and times with no compression … this is a very difficult choice to make as it is major surgery with all its liabilities.. good luck in the future

This is the vascularised Lymph node transfer and it is what everyone has had done writing on this blog …you can look it up on line to get more information but is the same as a LNT… nodes taken from one area of the body and placed somewhere in the lymphedema limb where needed most … scans and tests are always done before to see where nodes are needed.. however this is not suitable for everyone if there is to much fibrotic tissue as the nodes only remove fluid… it can take up to two years for the nodes to grow and start to see a difference …however it is not a cure but it helps

It is the lymphatic liposuction.. look up Dr Graznow i think he is an article on it …. it is lymph sparing liposuction so it does not harm the existing lymphatics .. again google search articles but not to be confused with liposuction that overweight people have it is quite different ..however compression must be worn 24/7 after but does reduce the limb a great deal …must be a surgeon with lots and lots of experience in this

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Lymphoedema Awareness

I am writing this blog to keep a record of my Lymph Node Transplant in the hope of inspiring and helping others.
I wish to bring awareness to the issues of Lymphoedema so that people will better understand this very difficult and little understood health problem. We need more research and a brighter outlook for those with both Secondary and Primary Lymphoedema.
Items in this blog are to only be used in conjunction with a medical diagnosis and with a treatment plan specific to your needs. Please check with your lymphoedems specialist if you are feeling unwell or unsure about treatment and care.. MLD should never be used if you have an infection..Please share this blog with your friends and family... Thanks

Feel free to share with others.. it can be distributed via social media, reblogged or added to websites.. please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog
https://lymphnodetransplant.wordpress.com/ Thanks